Saturday, June 16, 2012

One day at a time.

These past weeks our emotions have been thrown every which direction. I get a surge of hope each time he opens his eyes, talks to us and responds appropriately. And I come spiraling back down as his body greatly struggles with yet another task that he needs it to perform. I don't really know where we "stand", but it's certainly not on solid ground, that we do know. The latter part of this week we've seen him wake for longer stretches, interested in watching TV and at one point even asking to play a game.

Since I've last updated we've watched as our boy's body has become very, very swollen. His urine output has dropped significantly despite the use of lasix. And I was suspecting his billirubin was also on the rise as we could see the color of his eyes and skin change slightly...and I was correct. Petechiae began to cover his face and he started bleeding (a lot) from his nose and mouth. He was scheduled to visit the Daymed area of the hospital for another blood transfusion the same morning he began bleeding profusely. After struggling to do so, we eventually got the bleeding to slow and stop. We arrived in daymed and were not too surprised to hear he also needed platelets and albumin in addition to the red blood cells he was getting that day. He looked terrible.

He got blood on Tuesday and the following morning we returned for the platelets. He's scheduled to be getting albumin on Monday in Daymed. We were offered the chance to stay and 'fill him up', so to speak. And I, being exhausted and stressed, was ready to throw in the towel and stay. But Bryan, being the voice of reason, pointed out that Wyatt would want to be at home even if he's only sleeping. And he was absolutely right. While we were there for platelets he also had a follow-up chest xray, which didn't show much improvement from the last. In actuality, it showed that his left lung has collapsed a little more. He's relying on the bipap to take the breaths and breathe for him, but within the last few days I've seen a couple breaths that he's initiated. That's an encouraging sign right now, to me.

Since Thursday the seizures and twisting/circling movements have returned. Along with increased complaints of pain and coughing (and the need for suctioning.) We'll see how he does in the next couple days and go from there. Minute by minute, one day at a time. He's my hero, our very own Super Boy...

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  1. Every little positive sign is worthy of praise to God. Never lose hope. As a parent you are made to watch your children "do well". Your identifying Wyatt's every little improvement is so natural and so nurturing. What other mother could you be?

  2. We are praying. Praying very hard for Wyatt and all the DeStephano's. You are always in my thoughts.